Myeloma Canada Research Network: A Unique Innovation By A Patient Organization

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Myeloma Canada Research Network: A Unique Innovation By A Patient Organization

Patient Perspective You may not have heard of multiple myeloma. It’s a blood cancer. A devastating and stubborn disease that although increasingly treatable, still remains incurable.

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Members of the MCRN and pharmaceutical research partners attending the annual Scientific Roundtable in Montreal, September, 2014 (Photo: Myeloma Canada)

The location of the sixteen Canadian research centres contributing to the MCRN. (Photo: Myeloma Canada)

The future, however, holds much promise. Myeloma Canada, a patient-focused organization, has a four-pillar approach to tackling this disease—education, awareness, access and research, and its network of researchers and clinicians, the Myeloma Canada Research Network (MCRN) is having a significant impact on patient outcomes. Finding new forms of treatment is the driving force in the struggle to conquer myeloma. “We’ve been able to increase the life expectancy for those with the disease,” says Francine Gendron, Myeloma Canada’s CEO.

She lauds the Myeloma Canada Research Network for bringing together the best Canadian researchers and clinicians to work with patients to share research experience and knowledge, instead of working in silos. “This is really the golden age for myeloma research in Canada, but we still have a long way to go,” she says “Our short term goal, while we search for a cure, is for myeloma to become similar to a chronic disease where appropriate treatments can extend life expectancy and provide a good quality of life.”

Patient collaboration

The Myeloma Canada Research Network (MCRN) is the first and only national academic myeloma research group bringing together Canada’s leading myeloma investigators from 16 centres across the country under the umbrella of Myeloma Canada, a patient organization. The MCRN’s focus is on developing high-impact Phase II clinical trials incorporating promising new treatments and making them available through its member institutions that are located in both large urban areas and smaller communities across Canada.

This means that more patients will benefit by having greater access to more promising new therapies in more locations across Canada. The MCRN, thorough its collaborative and inclusive model, is truly devoted to expanding patient access to new treatments and novel therapies in Canada. This was the vision that Aldo Del Col had when he co-founded the organization 10 years ago. Del Col was diagnosed with myeloma in 2002. “In a few years, we have taken a quantum leap forward, doubling life expectancy” he says.

“The treatment options for this disease have progressed considerably from when I was diagnosed thirteen years ago. And there is a tsunami of promising new treatments in the pipeline. Our researchers, working collaboratively through the MCRN, are leading the way in improving outcomes for Canadian myeloma patients.”

Research spotlight

One of those researchers is Dr. Donna Reece, Director of the Program for Multiple Myeloma and Related Diseases at Toronto’s Princess Margaret Cancer Centre, who says there was a time a little over 10 years ago when there was no progress with the disease. The only thing to offer was decades-old treatments that bought people time.

Now there is a new generation of drugs being approved at unprecedented speed. “It’s an exciting time,” says Reece. “Seven years ago I didn’t know what other researchers in this field were doing, but we’ve brought everyone together under the umbrella of the Myeloma Canada Research Network.” As it turned out, clinical colleagues across the country were doing similar work. However, it was not until they had a platform to share their knowledge that they have been able to make huge advances.

Finding a cure

The Myeloma Canada Research Network has a two-pronged approach—to better understand the biologic features of the disease, and the second is to bring promising new therapies to Canadian patients via clinical trials. There are seven sub-types of the disease, some are slow growing, while others are more aggressive, so more research will help find better treatment and improve outcomes.

“Myeloma Canada is a very effective organization run on a shoestring budget,” says Reece. “The level of education and advocacy they are doing is remarkable. They are the voice for all Canadians living with myeloma.”

There are about 7,500 Canadians living with multiple myeloma. Despite the new treatments that are available, most patients eventually become resistant to the existing options. Additionally, treatment options can be limited in Canada, because it takes longer for drugs to be approved and become available, and accessibility through provincial drug programs can be limiting.

Adopting proper lifestyle habits is key to living a happy and healthy life. From proper nutrition to exercise to home safety to disease awareness and prevention, being informed and proactive is the best approach to living your best life.